It's #WorldCerebralPalsyDay, so here is your reminder that adult services for folks with CP are non-existent, and very little research has been carried out into things like, say, how my CP will change as I age.
CP is oddly categorised as the most common childhood motor disability, yet those kids grow up to be adults, who find that there's no support, services or even any real information for adults with CP.
What does a lack of research, information and services look like in real terms? Well, a few years ago, I started to lose mobility. I asked my GP, what could I expect as I age? To their credit, the GP was honest and said they couldn't say, because the research isn't there.
For 20+ years, I believed that my natural jumpiness was some kind of personal fault. Well, imagine my surprise when I learnt, through twitter, that folks with CP have a heightened startle reflex. No one had ever told me that, so I wandered around for years thinking I was flawed.
Everyone with CP deserves to have access to services as adults, and we deserve to know more about what to expect as we get older. Accurate, well researched information about what adult CP looks like should be a given, but it's not there, and it's a disgrace.
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